Goiter Support Group

Well Steph, it doesn't look like many people hang out in this group.
I'm curious as to what you decided to do, if anything.

I have a multi-nodular goiter that is growing, but normal bloodwork (even though I feel hypothyroid, my doc insists I'm not). Anyway, I'm considering a thyroidectomy just because this is becoming increasingly uncomfortable. I would probably have less hesitiation if I were hyperthyroid too...the uncomfortable fullness, vocal changes and occaisional swallowing problems are enough for me!

Granted, you never want to take any surgery lightly, but the risks here seem minimal by comparison to the goiter. You could have your thyroid killed off with radiation, but that would do nothing for the goiter itself. Removal seems the better option (to me, anyway).

I seen a new endo yesterday and all he did was push RAI which i do not want. He told me a thyroidectomy is not an option because my goiter has gotten so large he thinks it would be too risky too remove. Now I don't know where to turn.

Well that doesn't seem right, unless he's just afraid to do it. From what I've read, some people have to "interview" a lot of docs before they find one who agrees on a treatment that's acceptable. You need more opinions, as much of a hassle as it is to go from doc to doc. You should never feel "pushed" into anything!

Dear Steph, I agree with Laura that you should seek a second opinion. When you talk with your surgeon, please ask him or her about the possibility of Vocal Fold Paralysis following thyroidectomy. I had a partial thyroidectomy in 2007 to remove a massive multinodular goiter. The enlarged left lobe had pushed my trachea all the way to the right side of my neck (To see the CT scan, go to: http://arielproject.com/site/mysto...) and damaged the left recurrent laryngeal nerve. Long story short: the thyroid surgery left me with a permanent vocal disorder. The good news is, the goiter is gone. I wish I had known about the possibility of serious vocal damage prior to the thyroid surgery... now it is my mission in life to warn others and encourage potential thyroid surgery patients to ask a LOT of questions before having surgery. I wish you the very best of luck in finding a great surgeon and freeing yourself of the goiter!

Hey Ingrid - I read your story (beautifully written, by the way), and I just want to thank you for bringing it to my attention.

Maybe Steph's doc is concerned she's at high risk of VFP because of the size of her goiter. I don't know how big mine is, because I don't have my records, though have had 2 ultrasounds and a FNA biopsy. I know one nodule is bigger, and growing faster than the other. I have to go back in February to check it again, but I can tell it's bigger. I can hear it in my voice, and I'm feeling a little more breathless - yawning & sighing frequently, conscious of my swallowing (even if I'm not eating anything).

So I'll investigate all options. I was hoping thyroid meds would work to shrink it, and that my doc was a numbskull for not thinking of it, but after further reading and your story, I see it's controversial and not widly accepted treatment. What else is there besides RAI? I'm going to read up on your site a lot more, and maybe you've answered this there: What treatment would you choose if you could do it all over again?

-Laura

Thank you ingrid I really enjoyed your story.

I have an appt with an Otolaryngologist dec 14th. My endo did warn me that damaging my vocal cords were his concern but I just don't know where to turn now. I just want this thing out of me.

I'm with you Steph. Please do me a favor and post what your otolaryngologist advises....

Thanks,
Laura

What would be some good questions to ask the Otolaryngologist?

I've been reading about new treatments - ask him about something called Percutaneus Ethanol Injections to shrink the nodules, also ask about High Intensity Ultrasound beam treatments. I've read about both in a endocrinologist trade article online. We may have choices after all....I don't know how new these treatments are though. My next doc visit isn't until February, so anything you find out in the meantime would be great.